middlesister1
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GHIguy,
Welcome to our group and congratulations on having everything so far go as well as you could wish for (although it would be much better not to have to deal with any of this). It seems like in the short time, you learned a lot and know how important it is to be treated by a center with experience with CC.
Interesting about the Irish heritage. I didn’t think my mother had any traits that would make her predisposed to CC, but both her parents were born in County Mayo (maiden name O’Malley).
Take care,
CatherineHi Stephanie- One hint that I was amazed it took me so long to find- once you log in, on the upper right there should be a link to click that says “new posts”- this should show you the individual threads that have had new posts since the last time you logged in.
And- maybe we could put on the wishlist for future updates to see if there is a way to “follow” a topic.
Best wishes,
CatherineDear Lynn, I am so sorry for your family’s loss, but so glad he did not suffer at the end. I’m so happy to hear that you were able to have a Christmas together.
Your family is in my thoughts and prayers, Keep in touch.
CatherineI’m so sorry I won’t be able to make it this year, but I’m excited that it sounds like you are going to have a wonderful turnout. I’ll keep my fingers crossed for good travel weather.
Take pictures!
Catherine
Melinda,
Congratulations to both of you on 3 years NED- such wonderful news!
Also, thanks to John for supporting other patients.
Best wishes,
CatherinePositivity, what we liked about the SIRT was for mom although bad fatigue fir a month, easier than chemo. We only had the one ICC tumor without Mets, so it made sense to us (but we’re not doctors) that the radiation would be able to travel where the surgeon couldn’t cut due to bleeding risk. But, doctors did disagree- it was only one IR who said that our goal was to kill the tumor completely- others said it was to shrink it. We’re hoping it’s still dead, but even if it does return, we’ve had over 2 years treatment free. As Marion pointed out the guidelines, i hope many mire the same success. However I would push to have it done as we did, before chemo stops working.
Best wishes, CatherineDear Stephanie,
I am very sorry for your loss. Thank you for sharing her picture too; a beautiful lady.
Take care ,
Catherine
Janet,
Chemo is tolerated differently by different by patients. My mother ( was 73 then) went through 3 cycles of Gem/Cis and her hair did thin, but never to the point she needed a wig (kept eyelashes and eye brows.). She was sick the first cycle, but they adjusted her fluids and meds (added more steroids) and during the next 2 cycles it was just fatigue. Also, during the first cycle she still wasn’t fully recovered from surgery, so we’re pretty sure that added to the difficulties.
Best wishes,
CatherineVictoria.
We were told they always save and freeze extra tissue when they preform a biopsy; I would think/hope they do the same during surgery. With Mom, they had not saved enough tissue during the biopsy, so her ONC took a blood sample and sent it to a company which does the testing through blood (Guardant)
However, tissue is still the best source and many on the board have had their tumor testing done by Foundation One. This is becoming a common part of the diagnosis/treatment protocol in major cancer centers. But, even if not routine where your husband is being treated, you should be able to ask your ONC or surgeon if a tissue sample was saved and ask your ONC to send it out for testing.
Take care,
CatherineHi Ali,
Welcome. to our group. I’m very sorry to hear about your mother’s diagnosis, but very happy you found us. My mother’s treatment was a bit different, but end result was great and I hope the same for your mother.
After an unsuccessful surgery attempt (opened her up, looked at location of her one ICC tumor, and closed her back up), she went through 3 cycles of GEM/CIS. However, once that was completed, she went through Y-90 radiation treatments 2 times. The second time, they gave her xeloda two weeks before and after the treatment. Her IR doctor said the xeloda would help with the effectiveness of the radiation, and for us it did the trick. Mom has had clean scans for over 2 years since the last treatment. I’m not sure why it was xeloda rather than Gem/Cis when combining with radiation, but for us it worked. And, it was much easier to take a pill versus the infusions.
Keep in touch and Happy Holidays too!
Catherine
Dear Joe,
I ‘m glad you had a good Christmas but understand the mixed emotions. My mother is doing great, but my father was given a prognosis of a few months in early Nov. for a different cancer. I took my parents to Christmas Mass in the morning and I know there were times we all were fighting to hold back tears. The whole day was a mixture of laughs and tears, but still very special. We took many photos and I gave Dad a voice recorder so he can record some of his memories that he would like to share with us ( he had mentioned this desire to the hospice nurse last week).
We are giving Dad an Isogenix Pro shake every day in addition to meals to help keep his weight up. And, I know others have mentioned things like Carnation Instant Breakfast.
My thoughts and prayers are with you and your mother Debbie,
CatherineDear Jacquie,
Welcome to our group- I’m glad you found us too. Many years ago my husband had colon cancer when my daughter was 7, and although I was with him for surgery, I stayed home, took care of the daughter and he dealt with the cancer and chemo much by himself. I now regret that I let him face most of the emotional side by himself. However, with CC, it is even more important to have someone else with you for support as you work your way through treatment plans. It is a very rare cancer and finding a treatment center that has a multi-disciplinary team and experience is SO important. As Marion said, your husband is probably still trying to adjust to the diagnosis. It may help you ( or your husband) to read the section for newly diagnosed patients on the homepage.
Hopefully your husband will be a candidate for surgery which gives the best chance of a cure. However, if not, there are other treatment options and there is hope.
http://cholangiocarcinoma.org/newly-dx/
Best wishes,
CatherineDear Ron,
I’m sorry to hear of your wife’s diagnosis and that you have been brought into this journey that none of us want to be on.
I’m not sure how much you have read on the board yet, but my mother was also not given much hope once they realized surgery was not feasible. However, although she is not the norm (but hope she will be soon), we are 3 years later and she is doing great.
To get her there, we had to be a bit pushy, If you haven’t yet, check out the link for newly diagnosed.
http://cholangiocarcinoma.org/newly-dx/
I’m sure others will chime in to welcome you. Please let us know how your wife is doing. And. take care of yourself too.
Best wishes,
Catherine
